I was diagnosed with Lupus 4 years ago then diagnosed with Celiac disease 2 years ago, and I also have APLS. I have been very fortunate and have not had to be on any medication for the Lupus in 2 years. I have been under the greatest about of stress for over a year now, and think the adrenalin that was keeping me going as died out. Having said that I dont know where to go or what to do.
About 5 weeks ago I started having severe headache episodes, the headache doesnt ever go away it just gets worse at times. Two weeks ago I started to have stomache pain, not the same pain I get with celiac, severe stabing pain in my kidney area, I cant get comfortable it feels like pressure on my kidney's it also doesnt go away but is getting worse. It goes from one side to the other and sometimes I feel it all over (like now) It doesnt hurt to urinate at all. Then about 5 days ago I began the severe joint pain, knees and hands are where I feel it most,and the muscle pain as well. These are the main symptoms, my problem is I am afraid of Dr's I mean really afraid of them. I did go to my dr when the headache started he took blood test and said my thyrod was ok (I also have hypothyrod) and I should go to a neurologist. I do not think I should waste my time with a neurologist since I beleive this is all realated to Lupus.
I have never had any problems (till now) with my kidney's. But this pain is almost getting unbearable. Does anyone have any suggestions on what I should do? Like what to tell the Dr? My family is extremly angry with me for not getting this taken care of, but I am truely petrified of Dr and whenever I see him he blows off the problems. Thanks so much
Ok So if no one here has any advice can anyone relate to these symptoms? Has anyone felt this way if so what was done and how did it make you feel? I have never looked into anything about my Lupus, I kind of just deal with it. I have never researched it either, the times I had problems I ended up in hospital and was on medication for that time. When the episode passed I weaned off all medication. I do not even have a Rheumotologist, I was diagnosed by my hemotologist. I really dont know what to do or who to call where to start. It is like starting from scratch.
I have also noticed I feel pain in morning but as the day goes on it gets worse. I have also had to pack on the cover up because the rash on my face is terrible.
Hi. I'm just a patient, but I *think* the kidney damage associated with lupus is painless. I can relate to certain types of lower back pain, like stones & UTI's; but I think for those pain while urinating is likely. I also had "simple" back pain = where I could barely straighten up upon rising.
But I honestly think the real point is that you should contact a rheumatologist without delay. When your hematologist diagnosed you with lupus & treated you, didn't he *ever* send you to a rheumie? Maybe he could suggest someone? You could take a trusted friend or family member with you!
Did you wean *yourself* off medication without being instructed to do so? (Just don't answer that if you don't want to, OK?) I've taken Plaquenil & avoided sun for some years now, and it's helped tremendously. I decided right off taking Plaquenil was FAR PREFERABLE to my not taking anything, plus it would hopefully prevent my ever needing steroids.
I hope your hematologist can get you started ASAP on some ideas to pursue. Post more when you can, OK? Sincerely, Vee
I think the problem was straigtening one thing out at a time, and I was having blood clots which took precidence I suppose. He never sent me to a Rheumy, strange I guess I never thougth about it just listened to him. I stopped seeing him 2 years ago when I was sick and he couldnt figure out why, it turned out to be when they diagnosed me with Celiac. I called him up and told him and he actually apologized to me, I thought that was very big of him. Anyway, since then I have only seen my regular Dr, (who knows nothing and looks it up in his book everytime) and my Celiac Dr's at Columbia University (which is over an hour away). I was sent to local hemotologist for treatment for my blood.
I was on steroids and no the Dr weaned me off them all the time. I was also on some other medication I am not sure of the name it was some time ago. My neighbor has offered to go to dr with me, and so has my husband. It is finding one and getting into them, I called one and the wait is 3 months. The pain is not in my bac but my side, it is like pressure and I feel like cynderblock is sitting on my side with the corner jabbing me. I do have enlarged spleen, and liver but again have not had any problems and not checked in 2 years.
Interesting, my headaches started when I was in NC visiting. And I am a photographer and was doing a photo shoot a few weeks ago and felt like I got heat stroke maybe that is what really triggered all this? (along with stress) Thanks for your help. I am going to at least call the Old Hemo and see if he can get me in or send me to someone. Thanks
Hi, again. I had 20+ yrs. of severe GI problems, starting a good 15 yrs. before I had a rash. Took Librax & several other drugs, but none really helped. (I had other episodic problems, too.) I finally lost all belief in the specialists I'd seen (dermies, urologists, gastroenterologists, rheumies, etc.). I wondered if I had some OTHER kind of lupus, because I didn't fit enough of the "classic" symptoms & test results, yet much of what I had seemed in the ballpark.
So I took myself to a teaching hospital rheumie. My Dx was SCLE = subacute cutaneous lupus erythematosus, which is thought to be an intermediate form falling between discoid & systemic. I was positive for anti-Ro, which is the antibody seen most often in this "subset" of lupus. A smallish percent of people with SCLE can develop the worst things seen in classic SLE (kidney & CNS), but I've done well, all told.
So here's the joke (on me!): my 20+ yrs. of terrible GI problems abated quite quickly once I started Plaquenil & religiously avoiding sun.
Obviously this may have no bearing on what you're experiencing. But I just wanted you to know that chronic GI problems are apparently fairly common in lupus. And I * think* there's a very specific test for Celiac... Did you have it? In other words, if you aren't sure it's Celiac, that's maybe one more thing you want to revisit...? In any event, I hope you go on a real mission for answers & help. Life is too short to spend feeling lousy, if answers & help can be had. Keep posting when you have the time & the mood strikes, OK? from Vee
Yes, I had blood test and endoscopy with biopsy and I am 100% sure that I have celiac disease. I really have had no problems at all with GI since being on Gluten Free diet.(except when the gluten sneaks in by accident). My son also has Celiac, and doing great on diet. I was told that most people with Celiac also carry other autoimune disorders, like Lupus. Anyway, I was tested and and was told by experts in celiac that I have it.
I suppose I can tell you a little of why I am afraid of Dr.'s since I know 90% of the people here have experienced the same thing, or at least part of it. Like I said I had problems for many years and no one could figure out what it was, I was told it is in my head, I cant tell you how many times. I was told I have Lupus, then I was told I dont have it, then again I do have it. You know the drill, to the point I decided these idiots dont know what they are talking about. Then I would feel great and everything was fine and crash here we go again.
Anyway, that is some of it, the rest is truely horrifying to say the least. I am still trying to get the courage and strength up to find a dr and then trust and make appointment. Thanks for sharing your story with me and for your encouragement. Ill keep posting.
What did you say to the Dr when you called and made appointment? Tha sounds stupid, but I think you know what I mean, like, did you say your problems or did you say you have lupus and need to get in? Also, did they put you on the medicine or did you ask for the medicine? Thanks again
Hi. I just called & asked to book an appt., saying that I had enough "lupus-like" symptoms to want an appt. with an expert. They booked me without asking questions.
On Celiac: with all the problems I had for decades, not one of my suburban drs. ever mentioned it as a possibility for me. Although I don't have it, it would have been a plausible thought for me, too... I'm glad you got that much figured out---but sorry you have it & had such misery before that point.